A system of support and empowerment

The current system of treatment, education and support for those with vision-threatening conditions such as glaucoma is not meeting the needs of the patient. What follows is a beginning attempt to create a vision of a system that will empower those with vision-impairing diseases to become active partners in their treatment and encourage doctors to offer their patients the resources and information they need. We begin here by clarifying current needs and obstacles.

While the system envisioned here is not glaucoma-specific or AMD-specific, the development of thorough factual information on such diseases is a key component of this initiative.

As well, we will need to recognize that a person experiencing vision loss may well be dealing with several interrelated conditions.

The protagonists

The “patient”

(No one cares for this term, but it does identify people who are in the care of a doctor…) The focus of our efforts, this might be either:The focus of our efforts, this might be either:

The doctor

Trained to identify and treat very specialized (conditions) of the eye and optic nerve, faced with patients who present conditions/symptoms they often can not adequately address given current treatment options, they are allowed inadequate time for working with patients – for analysis and examination as well as communication — as well as little or no training in communicating with patients.

The tech, support or allied health professional

Techs and support staff often spend more time with patients than doctors and do so in a less charged atmosphere. They can be tasked with providing information and support, as well as referring patients to low-vision counseling.

The vision rehabilitation specialist

Trained and specializing in helping the visually impaired to asses their vision and eye health status and utilize devices and techniques to efficiently use remaining vision

The advocate

Their mission is to educate and inform and support those affected by vision-impairing conditions such as glaucoma… (NIH, AFB/VisonAware, Going Blind/Going Forward, the glaucoma foundations, patients’ associations, support groups…)

Needs and challenges

Patients

Those with conditions that can or are impairing their vision are operating in a vacuum, poorly informed of their condition, their prognosis, their treatment options and the critical information that can allow them to be an active participants in managing and living with their disease.

The patient with a vision-threatening condition faces a wide range of needs, yet rarely interacts with anyone beyond their rushed specialist/ophthalmologist, who is trained only to treat the organ disease they are presented with… These needs include:

  • a thorough understanding of their eye condition
  • an understanding of the potential effects on their vision
  • awareness of the potential benefits and risks associated with the treatment plan they are being asked to follow
  • an analysis of their current vision including early signs of vision loss that they may be unable to identify or properly understand, as well as an understanding of how to identify and monitor vision loss. (See “Bringing vision into focus” below.)
  • an honest presentation of the prognosis of their condition
  • recommendation/referral for vision rehabilitation.

What’s needed for patients

Patients need factual information that is complete enough to allow them a thorough understanding of their condition(s) as well as a support system. To address these needs they will need:

  • access to counselor/support person at their ophthalmology clinic//office
  • disease-specific websites, print resources, videos etc. that are thorough and written effectively to present technical information in understandable ways and that remain up-to-date with the changing landscape of these diseases. The Web is now the most universal means of reaching people worldwide (and is about to exponentially expand with the spread of inexpensive web-connected smart phones)
  • materials for doctors, clinics, etc. to distribute. (In some cases, the first level of these now exist, but greater depth is needed)
  • materials to aid in understanding the practical implications of field tests and how scotomas affect vision
  • online support group when a live group is not available locally
  • how to start a support group guidance

Doctors

This is a unique moment for the doctors who are dedicated to treating those affected by vision-threatening diseases such as glaucoma and on whom those affected rely, with the treatment paradigm shifting in important ways including:

  • increasing specialization of doctors, now more finely focusing on organ specialization and/or molecular biology (to name but two)
  • emphasis on a structural approach to the eye rather than a functional approach to a patient’s vision
  • health care system changes and pressures forcing doctors to spend less and less time with patients

(It’s important to note that the paradigm for the diseases themselves is continually evolving and that doctors often find themselves offering treatments that do not adequately reflect these new paradigms.)

Doctors need to be educated in (dare we say sensitized to) the needs of the patient. A major effort is needed to increase awareness among doctors of what a person with a disease such as glaucoma most needs to hear from their doctor (including the cold hard facts about their vision loss), what will help them the most to both follow their treatment regimen and assess and monitor their vision, where to refer them to for accurate, in-depth information about their condition and their treatment(s), where to refer them to for vision assessment rehabilitation, and how to incorporate patient-support into a medical practice. To name but a few…

There are currently available resources such as the film Going Blind, existing support groups and online forums, brochures from NEI, foundations, etc…

What’s needed for doctors

A focused effort on educating doctors would include:

  • panels and addresses at professional meetings
  • articles and editorials in professional journals
  • courses and seminars as part of medical school education and residency
  • training materials, resources and how-to materials for those who might be tasked with communicating with patients at ophthalmology practices, clinics, hospitals, etc.. (The ideal would be to create and fund a position for someone who will consult with and train clinic/practice staff identified for this new role.)
  • handouts and pamphlets for doctors (first level now exist, much more information needs to be developed)
  • a course (“Eye-to-Eye with Your Patient”?) for use in residency training, CME and elsewhere focusing on the needs of the patient dealing with glaucoma, AMD… and vision loss and on communicating effectively with them.

Tech, support, allied health personnel

Efforts can be made to encourage doctors and clinics to train and task techs and support staff with providing information and support on a patient’s disease and assistance in assuring the patient is aware of their current vision loss. In this position they are ideally suited to refer patients to low-vision counseling.

What’s needed for tech, support, allied health personnel

In order for tech and support staff to effectively support patients they will both:

  • Training in the form of CE courses, webinars and online educational and support resources
  • Educational materials to use in their discussions
  • Materials to provide the patient on their disease, treatment, vision loss and vision rehabilitation resources.

Vision rehabilitation specialists

Vision therapists rely on the doctors to make their patients aware of the need for and availability of their services. But this connection is more often than not not now being made.

What’s needed for vision rehabilitation therapists

The efforts in educating patients and doctors should both emphasize the place of vision assessment/therapy/rehabilitation. (See Bringing Vision into Focus below.)

Advocates

Advocates are saddled with an inability to find effective lines/methods of communication with those affected with these diseases and with the doctors who play a critical role in connecting patients with the resources that they need.

What’s needed for advocates

A consortium such as suggested here would provide support and funding as well as more direct communications with clinicians.